46th day of continuous migraine?

[Xiaoxiong]

Posting here in case anyone has ever heard of something like this, because even the paediatric consultant neurologists told us they have not seen it before.

DS14, never had a headache or migraine before and in good health (though with some mild hayfever and asthma in the past, mostly grown out of this). No one in the immediate family gets migraines either. No issues last term or over the Christmas holidays, went back to school ok for 4 days and then woke up at 3am on the 9th of January with what he described as the worst headache of his life and dry heaving. No auras or visual disturbances.

This has now continued for 46 nights, at 3am every night like an alarm clock and it just hasn't stopped. He has had only three nights "off", which were nights where he didn't sleep at all and kept himself awake as he was desperate to avoid the 3am headache. The last three nights he is now vomiting his dinner up as well. Increasingly he has pain while falling asleep. He has a headache and nausea all day plus discomfort reading or with light, but the big spike is every night around 3am.

He has had 2 MRIs which found a pineal gland cyst and a Rathke's cleft cyst near his pituitary, but the consultants seem to have concluded that these are incidental and not causing the issues. He's seen about 5 consultant paediatricians, 2 consultant neurologists (including privately), and they are all baffled. They keep asking about stress and lifestyle but he really isn't stressed generally (though he certainly is now, along with the rest of us) and has a generally healthy lifestyle with exercise, eats well, etc. Also this came on like a bolt from the blue, rather than ramping up slowly.

The only test he's had that's shown anything significant is a positive test for Epstein Barr virus (both the antibodies showing an old infection, plus the ones for an active infection so I guess that means a secondary/re-infection). That was many weeks ago now though. My hope was that this is all a weird manifestation of the virus and it will improve over time, but as the weeks wear on and he is getting slowly worse not better, that hope is dwindling.

He's had batteries of blood tests, all within normal ranges, neurological exams, ophthalmologist exam.

No painkillers or preventers have had any effect - ibuprofen, paracetamol, both together, ibuprofen lysine, sumatriptan, and we have done a week and a half on propranolol but that hasn't had any effect yet either.

He hasn't been able to go to school since before Christmas as every time he tries he has to run out of class to be sick or dry heave, or he is just in a daze. We are absolutely at our wits end - our next appointment with the consultant is on Friday but I fear their working diagnosis of "atypical acute chronic headache/migraine" is so vague - all the treatments take weeks and weeks to determine if there is any effect before we can try the next one. We have full private health insurance but as I am now discovering, it doesn't always help when the consultants both NHS and private have no idea what to do except try migraine prevention (while admitting they don't know if it's a migraine at all, or if it will work). I've asked for referrals to migraine clinics but the paediatric consultants want us to try front-line migraine prevention first.

Has anyone ever heard of something like this before? Any ideas gratefully received.

My DD had a 3 week headache a while ago. Like you, we found gp and a&e had nothing to help. As she was under 18 at the time, most meds are not approved. Naproxen was a strong as they would issue.

We eventually, by a process of elimination, traced the cause to muscle spasms in her neck. Physio on her neck, heat packs to relax the muscle, eventually helped.

She has been a migraine sufferer for years and I was so unimpressed that they had nothing to give to stop it. I even asked about muscle relaxants but they wouldn't give to her due to her age, as it was "disproportionate" to the difficulties she was having. They were very dismissive...

Things to investigate if you haven't already: is he hypermobile? This can cause soft tissue problems and is frequently found in migraine sufferers. Sometimes related to issues with the neck as related to connective tissue disorders.
Any issues with blood pressure / circulation?
Coeliac disease doesn't always present with gi issues - silent coeliac disease is a thing and can cause neurological issues! Go can screen via a blood test if you want to rule it out.

Thank you for all these ideas - I'm writing them all down to ask about tomorrow. They seem incredibly incurious about WHY the nosebleeds, WHY the vomiting, WHY 3am, why why why....nothing has been suggested to explain any of it apart from "atypical chronic headache/migraine".

The dismissiveness is the killer and I'm so sorry so many of you have experienced the same. Even a friend of mine who is a doctor herself has had that experience of being repeatedly dismissed as a worried parent of a migraine child.

• Pain killers - we were explicitly told at the hospital to stop using paracetamol and ibuprofen, because of headache overuse (he'd only been taking them for about a week at that point). They weren't making any difference anyway so we were ok to stop, but then they didn't suggest any alternative - I had to go back to the GP to ask to try sumatriptan but that made no difference. No one has suggested any other triptans, NSAIDs, naproxen or anything else. When I asked about it on Tuesday the paed said he "didn't know what to recommend".

• Preventers - we have been given propranolol only and it's making no difference, though I was told it can take weeks to assess any benefit. So I guess we continue until we have a better suggestion.

• Anti-emetics - no thanks again to the hospital who have suggested nothing. With the help of friends and the GP we have tried hyoscine hydrobromide (Kwells) which did nothing, ondansetron (which didn't work and also caused terrible constipation) and prochlorperazine (buccastem) which maybe is working a little bit during the day but doesn't seem to be preventing the dry heaving and vomiting. I'm going to the chemist to ask for promethazine today and see if that helps.

In the meantime I am also investigating if there are private tests for Lyme, coeliac, a migraine-informed physio for his neck and posture.

I don't think he's hypermobile, but I'll ask him when he wakes up. He's never had any issues with blood pressure or circulation. Always normal blood pressure when he's been observed in hospital.

The nosebleeds don't usually happen at the same time as the big spike in headache pain, though once it did and he woke up at 3am with blood on his pillow. They seem to often be right before bed when he's got the all-day headache at a lower level of pain, but they don't give any relief - just suddenly his nose gushes, but it stops relatively quickly. I can't even remember him ever having had a nosebleed in his whole life before this started (I know some kids are prone to it, he's not one of them).

The reason I mentioned metaclopramide is that the stomach often stops working properly in migraine which means that the triptan/other reliever sometimes doesn't work on its own so the anti emetic medication is used alongside the triptan/reliever to get the stomach and gut moving properly again so the reliever can do its job (it was a neurologist that told me this) . I don't know enough about buccastem to know if it achieves the same thing as metaclo, a quick google says it probably does. (Hyoscine hydrobromide/Kwells inhibits gut movement so does the opposite).

I can understand them not going all in with the triptans if they don't think it's migraine, but it seems that they do think it might be migraine and given that you can have at least 6 triptans a month without tipping into triptan overuse I can't see why they haven't tried more than one type of triptan (unless they have and I have missed it).

I hope the NMC and/or private neuro are helpful. And that he gets well soon.

My DD had something similar. Best advice is keep pushing and go privately if you can.

Nerivio.co.uk

This device really helped so might be worth a try.

My child had something like this at aged four (2002).He was awake at night crying and vomiting for about a week and was normal during the day . His blood pressure was also elevated .All tests done and he was found to have a Ganglion Neuroma of the adrenal gland .The adrenal gland is active at night hence the pain and sickness only at night .The tumour was removed and he was monitored by oncologists for five years but no reoccurrence .He is now a healthy 27 year old .

@faial they haven't - hospital didn't suggest any pain relief at all, just propranolol. I went back to the GP to ask to try sumatriptan and once we went through the 6 tablets the GP gave us (this was a few weeks back) no one has proposed anything further.

@helloisitmeyouneed we have private appointments in the diary but not for another 2 weeks. I think we will have to just go fully private and stay private - the NHS seems to be pushing anxiety as a cause which I really don't think it is.

@schnubbins now that is a very new and different idea to ask about, they haven't done any scans of anything besides his head. They've done a lot of blood tests on my DS - I appreciate it was a long time ago but can you remember what tests made them suspect something to do with his adrenal gland? Or was it just that it was happening at night? So good to hear he's happy and healthy!!

Long shot but guess it wont hurt mentioning the following. I have HHT (Osler, Weber Rendu syndrome) which can include nosebleeds (especially in children) and can start at any age. I had debilitation migraines for most of my adult life and nothing helped. After an accident where I ended up in A&E and scans were taken of various organs an incidental finding was made where an AVM was found in my lung (they can crop up anywhere in your body). A year later I had said AVM clamped (specialist hospital but done on NHS) and my migraines completely disappeared overnight and I've been migraine free since. Like I said long shot but I feel so sorry for your son :(

@whatthedickens5 wow, another new suggestion - and I'm so glad you're now migraine free! Pardon my ignorance but what is an AVM?

And what does HHT stand for?

@whatthedickens5 your story actually makes me worry again about them missing something big with the "migraine" symptom-as-diagnosis though.

It does seem like for some (many?) people with persistent headaches or migraines there actually IS an underlying cause somewhere, it's just that once the clinicians have eliminated the big red flags like a giant brain tumour, they say it's "just" migraines and then you're on your own to figure out what combination of symptom management and prevention works for you.

Yes agree with this sadly.

My DD was 9 when it started so ‘too young’ for most medications. We are now seeing an excellent private neurologist and ENT but we still haven’t really got a proper diagnosis.

Push back on the anxiety suggestion I think that’s often what they say when they aren’t sure what else to say!

Dear Op

I remember everything like it was yesterday .We had been swimming in a public swimming pool and his brother DS2 presented with vomiting that night . DS1 was sick the following night and I didn't think anything of it .However the nightly sessions continued .He was only four years old so probably not so competent at describing his symptoms . He was vomiting and writhing in his bed After night four I was beginning to think that something was not right and he was very unwell despite not complaining much during the day so brought him to Doctor who said he was constipated !!! I knew that was complete rubbish but by about day 7 I knew something was really wrong and brought him to a Paediatric Hospital .They were also not really taking me seriously but I pressed for an abdominal ultrasound .
In the meantime they checked his blood pressure which was very elevated Abdominal Ultrasound showed a mass on the Adrenal Gland (top of the kidney) At first they suspected a Neuroblastoma and so did an MRI, Bone Scans and countless blood tests .A very difficult time indeed .His bloods/Urine collection showed raised Adrenocortocothropic hormones( ACTH) and catecholamines

Surgery revealed then the Ganglion neuroma which was removed along with the adrenal gland .These types of tumours are mostly benign but do present often in childhood .The raised blood pressure would cause headaches and vomiting so it could be worth looking into or at leat keeping it in mind

Hope you find out what is going on soon .I really feel for you.

I would be wary of private Lyme disease tests, there are lots of charlatans out there making money from distressed people (and I have had Lyme disease!).

I assume, given headaches and nosebleeds, that his blood pressure and blood counts are still normal? (Sorry if you have said this already!).

The fact that this is happening at night speaks volumes as the adrenal gland is a night active organ

They probably won't recommend painkillers if they think it's migraine (long term migrainer here). My first migraine was at 15 and lasted a week. I've had upto 6 months with continuous pain before so it's definitely possible. Unfortunately sumatriptain is the lest effective triptain but I believe that they won't give anything else to under 16's. You could try asking your GP if they would let him try the nasal spray rather then the tablets as it's normally better abosred. Although I can see that being an issue with the nose bleeds.

I see you have an appointment with the National Migraine Centre which is great, they helped me loads last year. They will be able to suggest anything that will be use and should be able to write a treatment plan for your GP.

Also seeing a neurologist is good to and you won't be ruling out anything else as most neurologist don't just deal with migraine so if they think it could be something else or linked with his glads then they should be able to help with that to.

Even though you have never had migraine, migraine is also linked to hay-fever, asthma or allergies so if there is a history of any of these in your family it's perfectly possible.

Propanolol can help with anxiety so effectively you also treating any anxiety.
Hopefully further appts can pinpoint differential diagnoses and treatment which works

I know it is frustrating but you do have to be patient. Some of the medication can take months to work / rule out. As someone else upthread said painkillers don’t tend to work for migraines and gps can only do so much. The neurologist will have more options available but don’t expect a quick process.

I've done a bit more reading about cluster headaches and there are definitely some aspects that fit what he's suffering more than migraine - and the treatment appears to be completely different so if it is cluster headache then all the time spent on trying to prevent migraines is potentially time wasted.

I appreciate the need to be patient and that it could take a long time to find out what helps, but the hours of vomiting, pain, nosebleeds, other weird symptoms are so debilitating and extreme that it feels to me like an emergency. It's not turning into something that he can live with, at least not yet.

I'm sitting here waiting for a callback with the paediatrician from the hospital to review how the first two weeks of propranolol have gone (answer: no effect yet) so I will ask her if cluster headache is something they are considering.

@MigGirl there is definitely plenty of hay fever, allergic rhinitis, and asthma between DS1, me and DH, as well as wider family. I feel so lucky none of the rest of us have ever had migraines on top.

Hello @Xiaoxiong . An AVM (arteriorvenous malformation) is an where a vein and an artery tangle bypassing capillaries so blood does not get filtered running through these. They think that that can lead do headaches and migraines but they are not entirely sure either.
HHT is quite a mouthful and it stands for Hereditary Hemorrhagic Telangiescstasi or also know as Osler Weber Rendu syndrome. I had nosebleeds, migraines and nausea/vomiting most of my life and everything disappeared once by AVM in my lung was clipped.

Bumping my own thread as we are still in the same boat on day 54 of this nightmare. Nausea, dry heaves, vomiting, nose bleeds, headaches like a knife to the temple...and then the massive 3am spike every night.

I had suspected for a while his BP was spiking at night, but for the first time I caught it on the home monitor we have, 147/86 when he was about to heave and was dizzy and had golden lights swimming around in front of his eyes. (It's always normal in the daytime when they've triaged him in the hospital).

I'm going to send another cry for help off to the consultant paeds at the hospital, but otherwise all we have next in the diary is the national migraine centre a week today, and then some private neurologists next Thurs/Fri in the hope they can advise. So nearly 2 weeks more to wait.

I am so so sorry you are going through this. If it were my child I would be beside myself with terror.

I have nothing to add other than your instincts are right - keep fighting for answers. What is happening is NOT normal. The doctors collectively seem to have fallen foul of treating the tests rather than the patient. When he tests negative for scary things, they seem to be saying ‘well, nothing to see here’ rather than doing some extra homework and saying ‘we obviously have a very sick child. What’s next’.

Keep asking for second opinions. Keep vocalising that what he is experiencing is sudden and extreme and life limiting.

I also wonder there’s some discrimination going on. Our society famously treats teenage boys as less deserving of empathy than other groups. It’s awful to think but I wonder if he were a little girl whether there would be a bit more urgency (i say this as a boy mum)

Keeping you in my thoughts @Xiaoxiong. This is a terrible position to be in. Can you ask the neurologists if they can put him on a wait list for an earlier appointment if one becomes available?
If you become really worried/if anything else goes wrong then straight to A&E and push for a CT scan. You can't be certain as to what's going on in his head.

Thank you both so much

We plod onwards. NHS consultants just saying to stay the course and eventually the propranolol "should" start to prevent them. No sign of that as yet and we're now up to 60mg a day, plus anti-nausea meds which don't reliably work either.

No interest in the blood pressure ("yes, blood pressure can fluctuate especially when in pain"). No interest (still) in the fact that it's every morning at 3am. No interest in a re-scan of the cysts to see if they're growing. No interest in doing a sleep study. No interest in trying steroids + oxygen in case it's cluster headaches.

They are so quick to say what doesn't fit so that's why they "can't" do x, y or z, without any acknowledgement that NOTHING seems to fit...

Hopefully the private appointments next week will get us a bit further forward. I've asked for us to be put on cancellation lists, thank you for the suggestion @BlackSwan

I've also had a "migraine and headache informed" physiotherapist recommended to me by a friend who had cervicogenic headaches, and we've got an appointment on Thursday - who knows if it will make any difference but nothing else has, and at least it won't hurt him.